IPI Week 108

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Hello All,

I've been laying low for awhile, but thought it might be a time for an update.

I've just reached my 108th week of participation in the IPI "Brain" trial. It's a bit overwhelming with all the knowledge I've gained about Melanoma since my "move up" to Stage IV in January of '09 to still be an active participant.

The MRI was consistent with the last done 3 months ago. 3 small "enhancing" lesions (too small to measure) in the brain. The docs are about ready to call them necrosis. The remains of the radiated tumor in my C-spine is slowly shrinking away as my body disposes of the dead tissue.

The mets on the left adrenal and the small bowel disappeared along with the majority of lung mets over a year ago.

One pesky met in the left lower lobe obstructed a bronchial tube and caused the formation of a couple of small semi permanent pneumonias. In the last month two bronchoscopes were done on the lobe. The first, a flexible clearly showed the lesion in a very accessible location. A week later a rigid tube scope was performed to attempt to remove the entire met. Unfortunately there were some unforeseen difficulties and only about 2/3rds of the met could be harvested. In addition the bronchial tube and lower lobe were "compromised" so the decision was made to remover the lower left lobe with a VATS procedure to be done in two weeks..

The bottom line is once the lung procedure is complete I should have no active disease. HOLY S*iT BATMAN!!!!

The other good news is that I will remain in the IPI trial and continue on maintenance.

Same question I asked yesterday. The answer is "unknown" however, it's suspected the BMS might want to keep responders in the program so they can have better control of the dosage, schedule, scans and followups with a group even if / after FDA approval.

So we are just going with the flow.

Jerry from Cape Cod

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

Fabulous news, Jerry! I want to be like you!!! I haven't heard anything back from Montreal about my ipi trial, despite several attempts to contact them. It seems BMS is stuck on whether I can have my week 24 CT scan here in Nfld, and not have to go to Montreal. I really don't understand why they're being so GD picky for a compassionate use trial! Anyway, hopefully I'll hear something soon. As for you, congratulations!! I hope one day I'll be able to brag about my own week 108, and you'll be congratulating me. Keep up the super duper response!

JERRY...after the lung procedure...that means you're NED..yeaahhhhh. That's what all us stage IV aspire to be...I want to be just like YOU!! Like Sharyn, I'm waiting to see if I'm still eligible to continue..I pray so. Val

I love these types of stories...congratulations! I am so happy to hear about your success; you are so helpful to everyone on this board; you definitely deserve this! You are in my prayers for a successful VATS.

I wonder if you are the longest responder here. How many timres did you get the medication now?

I had to end my trial (10mg/kg) after 8 rounds (in week 72). My fatigue was getting to much in the way of a normal life.After reviewing the latest scan results I also found out that I had an enlarged spleen, so I am happy I ended the trial.

I'm happy to hear that you are doing well. The researchers don't really know how long the blocker will work BUT if you tolerated all those rounds it's probably still in your future "arsenal" if anything should happen. I also believe that we are at the very beginning of a lot of new science that will benefit all of us with Melanoma.

Best,

Jerry from Cape Cod

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz